Can we change the way things are?
 

Yesterday, looking that the table of contents of the NEJM I came across this article-

http://www.nejm.org/doi/full/10.1056/NEJMms1207114

I was thinking what do we want to change in MG? How realistic is it that we will succeed? How do we give MG the right face and make physician and society see it as it really is?

There are two ways in my opinion-

One is to reach the public (with movies, books etc).
The other is to reach those physicians who take care of patients with MG and the way to do that is through medical journals and professional conferences.

I was thinking-what if we add up all the stories of patients whose diagnosis was delayed for many years, combine it with medical data (so it will be accepted to a serious journal) and then publish it as a case series?

I will be glad to write it (and hopefully find a neurologist who will be ready to be a co-author on this).

What do you think?

I like it Alice and want you to go for it. You may need to do a statistical data survey among members here to get some facts about all of us but I'm sure we all would help you. I think this study would be important not only to MD's but also to us RN's who see patients for a different condition upon admission and "Oh by the way, I have MG. That's nice, what is that?" Best of luck and thank you.

Count me in...i was wondering if there might be a way to download all the threads into word doc or another format so that we might go through, organize and summarize what has been written

"The other is to reach those physicians who take care of patients with MG and the way to do that is through medical journals and professional conferences.

I was thinking-what if we add up all the stories of patients whose diagnosis was delayed for many years, combine it with medical data (so it will be accepted to a serious journal) and then publish it as a case series? "


I vote for this option !

SoftTalker (Sue)

......Mine is still being delayed, but if any of my information is useful for this project then I will be happy to supply it otherwise help out in a different way since I am not in the officially diagnosed category.


Dear Alice.....

This is a fantastic opportunity for people to contribute and help promote change on a different level than what is usually achieved on a forum.

A film (I think) might need more opportunities for´live´cooperative discussions in the preliminary stages.

The idea of a case series would work extremely well at this time with the ´virtual´world where so many here exchange information/ideas and their excellent descriptions.


Thank you!


Anacrusis

Alice, I think that we are all willing to help you.

OK, great.

We have no deadlines and do this at our own MG pace. :)

What I suggest is that anyone who has had a significant delay in the diagnosis of MG and is ready for his case to be used in a medical paper (without his name of any identifying features of course), will let me know (here or PM me) and give me a brief outline of his/her clinical course, test results, response to treatment etc.

It's a great idea Alice
and we all have stories of not being understood but its not just in being diagnosed its even when that happens it can be bad and that's worse
Theirs research going on and that could also be a way of exploring !
In the UK just a few months ago their was a TV programme featuring
A patient with MG ( Holby City ) which I think was good.
I was diagnosed 4years ago and have had 2 Neurologist both have said that
I no longer have it I'm sure everyone will want to help
Alan

Do you want our entire case histories? Have you thought about creating a form or questionnaire?

This is an example of the kind of article I would like to write.

http://www.bhare.org/Geier2.pdf

I don't think this was ever done before based on data from the internet, so we would have to prove the credibility of the data. (some physicians still think that patients participating in internet support groups are unreliable and or cyberchondriacs and one of those could be a reviewer of the article).

I am also not sure how to go about this legally. If it was a case series of my own patients I would ask for the approval of the IRB of my hospital. In this case I believe we would have to create some consent form which each of us will sign separately.